Saturday, March 14, 2009

My Story

"Excuse me, can you tell me where the bathroom is?"

"Are you pregnant?" "Nope, just bloated because of mass quantities of steroids, but thanks for asking!"

"Any accidents?" "Any urgency?"

I hope you have not lost your sense of humor. Chances are if you are in remission, you can smile at these questions. And if you are in the middle of a flare-up, you are just groaning ...

Welcome to my life. I am 25 years old and living with Crohn's Disease. As I search online for enlightenment concerning this disease, I am aware that not enough people talk about it! I want to hear your story, I want to learn from you and your experiences. I want you to learn from mine. It also makes it easier living with this disease when you know someone else has also raced to the bathroom or driven white-knuckled all the way home. Of course, our disease is unique to each individual. That's what makes it such an adventure!

Luckier than most, I have an incredible family support system that begins with my mom. She has suffered with Crohn's Disease since age 20. I know she feels bad that genetically she passed on this disease to me, but I don't feel bad. She gave me the best genes she had plus Crohn's. It could be a lot worse. In addition, my husband is amazing. We actually wonder if any other couples talk about bowel movements as much as we do. It is typical of him to point out bathrooms in restaurants and loyally follow me into every health food stores we see. We have been together for 6 years and he has done as much research on Crohn's as I have. He doesn't grumble about our very typical and unflavorful meals and for that I am very thankful.

I was diagnosed at age 17, after a rocky soccer season composed of "run, sprint, dribble, race to the bathroom, get back on the field, run, sprint, defend the goal, race to the bathroom." I didn't eat lunch so that I could participate in soccer practice. My pediatrician did not believe I could have IBS and/or Crohn's so my mom took it into her own hands, bringing me to her GI doctor. And you know the outcome. Cobblestoning anyone?

I have never reacted well to drugs and since being diagnosed in 2001, I have never been in remission. At different points in my life I have tried Pentasa, Imuran, Prednisone, Entocort, Cholestyramine, Lialda, Prilosec, and Cipro just to name a few. In 2004, after extreme abdominal pain I ended up with emergency surgery and a small bowel resection. Goodbye 12 inches of diseased intestine...take the appendix with you! Oh, and don't forget part of the cecum. Fortunately, surgery opened my very narrow small bowel back up, unfortunately, it did not help control the Crohn's.

Fast forward- For the past 6 months I have had incredibly active Crohn's. I finished graduate school, got married, got a real job and with all that positive and negative stress I found "normal" to mean trips to the loo about 10 times a day. Isn't that normal? With a 5'0" frame, dropping 20 pounds seems like a lot...

This Friday, March 20th, I will begin my first Remicade treatment. After careful consideration of my options, I would like to be more aggressive about my treatment. Since very little exists as to patient testimonials and experiences with Remicade, I would like to use this blog as a way to share my story.

For those you living with Crohn's Disease or supporting somone who does, you are in my thoughts and prayers. I applaud you and hope you are doing well managing your sense of humor, your optimism and your sweatpants:)